Providing care for an ill family member or friend is a job all unto itself. It can be very fulfilling and, a time of bonding but, it certainly has its moments of frustration. I have experienced this first hand in my family. My Grandfather has Parkinson’s disease. He’s had the disease since he was in his mid 60’s. He had started experiencing some vague symptoms and went to see his doctor. When his doctor finally figured out what it was through ruling all else out, my Grandfather didn’t understand his diagnosis and didn’t take his medicine. Then, when he finally accepted his illness and started taking his medicine, his disease was progressing quite rapidly. A man who made a living in construction, hunted in King City (way back when), built a garden and walked us to school every single day, (even when we were too old to be walked to school) was now confined to a wheel chair.
My Grandmother is the strongest person I know. She is taking care of him with the help of CCAC. We are constantly in awe of her strength in caring for him and, stubbornness about receiving help. They have been approved to receive support from a personal support worker twice a day, once in the morning to bathe and dress him for the day, and then once at night to put him to bed. She is responsible for the in between, to take him to the washroom and transfer him to the chair. Through this process, I have gained first-hand experience from the view of a family member on how our health system interacts with those who are in a sort of limbo. They are not yet taking up a hospital bed but, may in the near future require more resources. In the beginning stages I remember being so frustrated to learn that if they had a nurse coming in for care, the physio could not come in until the nurse was done her services. Then if they needed OT, that person couldn’t come in until physio closed their case. I found this mind blowing – how can someone get timely care if they are only allowed one practitioner at once. What if this is the cause of a decline in their health or mobility?
As time has gone on, my grandmother has settled in her role as a caregiver however, I can see an occasional flicker of frustration when he does something by accident. For example, when she is trying to help him from one seat to another and he cannot move his feet. When she is explaining these situations, she gets so mad, as if he is doing it on purpose. I then calmly and respectfully just try to remind her it is part of the disease, that sometimes he just cannot get his brain to tell that foot to move. He has also started getting confused at night. Thinking he’s back in Italy, he tries to get out of his bed to fetch his donkey and tend to the fields. My grandmother says at these times, he’s moving better than he can during the day (slightly adding to her frustration)! As soon as he wakes up though, he falls to the floor and she has to call the paramedics to get him back into bed. The innovator that she is, she tried to secure one leg to the bed so that he couldn’t move however, somehow, he figured out how to release himself.
I got a call from CCAC Friday night. They expressed significant concern about my grandmother’s practices. They proceeded to tell me that she was using an apron to safety pin him to the bed so that he couldn’t get up. They indicated that they told her to stop doing so but weren’t sure that she would. They then asked that I follow up. They also mentioned that she was not being receptive to long term care. Firstly, I replied and said of course I would follow up on the apron. Since they mentioned it was to stop him from getting up and removing his catheter, I asked if they had recommendations around other solutions. They said that my grandmother could hire a helper overnight to help monitor him and for the later, a onesie is helpful. I found it interesting how quickly she jumped to hiring someone, especially since my grandmother doesn’t want the extra help. Then we moved on to the long-term care issue. I mentioned that my grandmother was foremost concerned about how this would affect my grandfathers spirits and secondly about the care that he would receive. To my surprise, they indicated that yes, care in long-term facilities can be subpar but, my grandmother could monitor that and, if she wasn’t there, she could hire someone to watch him. This is outrageous. How could you force someone to consider/go to long-term care knowing that the care is subpar and then suggest they hire someone. As I reflected on this, I realized, did they even ask my grandfather what his plan was? Maybe he wants to die at home? Why are we getting them on a long-term care list?
I went to go visit my grandmother about the apron situation after expressing multiple times on the phone that she could not do this. You must understand that my grandparents save every single penny – have never been to a restaurant in their lives (only eating out of their garden and the odd thing from the grocery store) and seldom are out buying new clothes. My grandmother can sew and often repairs the existing clothes. They do not want to hire a caregiver, she is still with it and managing and, also, that is money out of their pocket. When I got there, she showed me her apron invention and I told her that despite the fact that she loved my grandfather and was doing this for his safety, she could no longer pin him to the bed. After I was able to get this across, we started brainstorming how she could make a onesie. At which point she realized, ‘They just don’t want me to pin him to the bed?’ of which, I sighed in relief and responded with ‘exactly!’. The other option that I showed her was an alarm. It is a pad that goes underneath his shoulders and if it senses pressure relief it will sound to advise her he is getting out of bed. Knowing that she is sensitive to cost (despite all of us willing to purchase anything for her), I sourced a reasonably inexpensive option and presented acceptable costs to her. She was willing to think about this.
Reflecting on this experience, the disconnect between providers and patients just becomes all the more evident to me. Providers need to take a minute to figure out what patient’s needs, wants and motivations are, to try and develop a compromise. We cannot just offer patients what we think is the right solution in a one size fits all approach without considering their cultural backgrounds and way of living. My grandmother would never have understood the onesie if I didn’t take the time to discuss how to make an apron into a onesie, in which case she might have secretly continued what she was doing or, felt like she was misunderstood and may have withdrawn from the support of others.
This is just one of the reasons I am passionate about a patient-centred approach and believe that a service rooted in education and advocacy, is a valuable resource for those trying to navigate their own care.